Posted by Karen
So I missed doing a blog last weekend…  If anyone out there is reading this, and actually cares if I write, my apologies!  Last Sunday, as it happens, Pete and I took Miranda and Owen to Washington State to meet up with Suzanne, her kids and her mother.  The excuse for a get-together [...]

posted by Suzanne
Our medical insurance is now in effect and Erin has an appointment with her new pediatrician the first week of December.  We all have to change doctors under the new plan but changing Erin’s doctor is much more nerve racking.  Most likely this pediatrician has not heard of FOP (Fibrodysplasia Ossificians Progressiva).  It’s [...]

There are lots of strange and puzzling things about Fibrodysplasia ossificans progressiva.  One of those odd features is that FOP isn’t happening all the time, 24 hours per day from a child’s birth.  Instead, it waits until a certain point in the child’s life, becomes symptomatic and then proceeds after that in fits and starts.  [...]

By Karen
Anyone who’s been following this blog for a while knows that we try to let Miranda have as normal a life as possible.  If this means doing things that have some degree of risk for a person with Fibrodysplasia Ossificans Progressiva… well, so be it.  It also means that every now and again, fate is [...]

By Karen
Halloween is a time for all things strange and scary…  It was fitting then (in a twisted, black humour sort of a way) that this past week, leading to the end of October, we had the bizarre and disturbing experience of watching Miranda’s bicep swell up to twice it’s normal size.  And, believe it [...]